A Difficult Day With My Constant Companion – Schizophrenia

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Besides being psychotic, one of the hardest parts of having schizophrenia for me is making plans to do something like go on a trip, go to brunch, attend a conference, start a job, or any other normal activity and then have those plans completely shattered by anxiety or paranoia.

I had a simple meeting with an advisor today, and ten minutes in, I walked out and left everyone sitting there. I couldn’t sit one more minute, my heart was racing, and I couldn’t sit still. I walked to our car; I tried to lay down and rest. I walked back to the office where my husband and two other people were talking, and I sat down for a few minutes, and then I excused myself. I walked to Starbucks, bought a banana, ate half of it, sat in one of the lobby chairs for a few minutes then joined the meeting again.

Seriously? I can’t hold it together long enough to have an hour-long meeting about a topic that directly impacts my life and well-being? If I weren’t so stressed out, I would cry. I ended up making it through the last fifteen minutes of the meeting, and I am home now where I had to take an extra dose of medication to settle down.

When I was younger, I had many more episodes of psychosis, and except those, I had a much easier time carrying on with the daily details of life. Now, I can have the best intentions, and I am unable to see through some of the simplest tasks.

It is so frustrating, humiliating, and discouraging to wake up, feel fine, and start going about the plans for the day then to feel overwhelmed by anxiety or paranoia (most often anxiety). A panic attack can strike anywhere at anytime no matter what your intentions are or how important what you are doing is.

I know that I am lucky that I can sort out my thoughts enough to write articles and essays, but that is only a small part of being a functioning adult – there is so much that needs to happen on a regular basis, and so often I am incapable of making that happen.

My husband has endless patience with me, but I do not have the same patience with myself.

Today, was rotten, and I am feeling a little sorry for myself for having to live with the symptoms of schizophrenia. I’ll get over it, but I need this minute – can everyone just give me this minute, please?

 

What Responsibility do we Have to the Readers of our Social Media?

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Most people don’t think about the consequences of what they post online. We hear about it once a week or more; someone posted something that got them fired, or arrested. In other instances, people bullied or harassed someone, and their social media was shut down for a period. There are all sorts of examples of people doing “dumb” or even “harmful” things online, but what about the everyday posts? The posts about this great thing, that great vacation, this new promotion, that new car, etc.?

An old high school friend wrote to me on Facebook last night and said that a year or so ago he connected with a large group of us from high school after not hearing from any of us in over thirty years. He said the connections were great initially, but then he realized everyone had accomplished so much, but he had not. He said this realization made him feel so bad, that he got off Facebook altogether. I assured him that half of Facebook is a well-curated lie.

So many people only post the “greatest hits.” or highlights of their lives. You don’t see too many people post pictures of themselves running to the store without makeup, cleaning the toilet, or bombing that big interview or presentation.

My favorite Facebook friends are those people who post about the underbelly, dirty, difficult part of life. Those people who post stories about their medical problems, their children’s difficulties in school, how they had to eat Ramen for supper two nights in a row because they were having a hard time budgeting on their income.

I don’t want to think that people are having a terrible time. I don’t want to think that people are struggling and suffering on a regular basis. But I do want to know that life isn’t one trip to Europe, one trip to Cancun, one trip to Morocco, and then gourmet meal after gourmet meal after gourmet meal all while having the perfectly coiffed hair, nails, and makeup. And don’t forget if you eat the right things and take the right supplements and do just the right amount of exercise you too, can have perfect health (a myth that is so damaging).

We don’t owe anyone anything on social media, not in any real way. We can create and put forward any story about our lives that we want to. But if I have to chose which friends I would like in real life and which people I would reach out to help in a pinch, it is going to be those who occasionally post about life’s difficulties along with life’s pleasures. A little salt with that sugar, please.

Life isn’t easy or without suffering for anyone. The great equalizer in life is that we all die. The very fact that we must face our mortality should give us compassion for each other in ways that don’t seem to present themselves frequently on social media. I’m happy that everyone I know has some picture perfect moments in their lives, but I’m even happier to know that the people I like and associate with are human and have the occasional struggle. Somehow, and maybe it makes me a terrible person, I can relate to those who struggle more than those who constantly say they are sailing.

Looking for the Positive Inside the Negative (or mean people suck).

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There are times, especially with writing that I feel a little twinge of envy toward other writers; when someone posts their latest essay in the New York Times, or Washington Post, or other hard to break into publications. The envy I feel never outweighs the good feelings I have for them though, and the envy never clouds my wanting to support them, congratulate and see them succeed. The only other time I feel negatively toward someone is when they are a mean person.

I don’t understand mean people. I don’t understand what motivates them, or the thought process that leads up to them choosing to do something hurtful to another person. I simply don’t get it, and maybe that is a good thing, but it feels like a disability – that not understanding.

When people are mean to me, I take it particularly hard. For one, I think to myself, “Why would you have hard feelings (jealousy, anger, envy, etc.) toward someone who struggles with schizophrenia every day? Why wouldn’t you want to see that person, with so many odds against them, excel, succeed, and have good things happen to them?”

There are people (almost always women) who are mean to me, and some on a regular basis, and that “meanness” is confused and clouded by the “good” things they say and do. It is the type of meanness that if you were to point it out, they could claim, “Who, me? I didn’t know that! I didn’t intentionally do that,” or they might say, “How was I to know?” When you know full well, that they have known about the thing they said or did that has hurt you for years.

I have diverticulitis, and since my first episode with it, there are many foods, that I love, and that I would consider comfort foods that I can no longer eat.  I miss many of the foods that are off-limits tremendously, and occasionally I will say to my husband, “I just wish I could curl up and eat popcorn or nuts and watch television. It seems like a simple thing, but one I enjoy so much and I miss it.” The realm of food is an area where people can be mean to me – always making sure nuts and popcorn are around when I am there. Frequently, talking about eating nuts and popcorn, etc. I don’t even know what the person’s goal is other than to make me feel bad.

I have another person in my life that brings up a person who made my husband’s and my life miserable for many years. She does it in a way that she can claim ignorance but after twenty years? Ignorance?

All of my life I have heard people say to look for the “silver lining.” I guess the silver lining in this situation is that people don’t see me as someone they should feel sorry for, or be nice to because I have a tough time. Apparently, these people don’t see their actions as kicking someone while they are down. I am going to try to feel good about the fact that I must handle the “mean girl” mentality of other people just like anyone else would and feel happy that schizophrenia doesn’t seem to be a part of the picture.

The Complex Relationship Between Schizophrenia and Religion

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For the past few weeks on Facebook, I have seen dozens of posts trying to shame people into not saying that they are “sending thoughts and prayers,” after a disaster or shooting. I can understand people’s frustration with politicians who repeatedly send thoughts and prayers and then vote down gun control or funds for disaster relief. That makes sense to me, but to criticize everyone who says, “thoughts and prayers,” shows a lack of understanding of people who have faith. Not everyone can send money and people who truly do pray, believe their prayers are powerful and that they get heard. I can understand if someone else thinks that praying is useless, but it isn’t useless to others. Why can’t people just have that without it being another way to shame, insult, divide, criticize and act “smarter” than someone else?

When someone has schizophrenia, arguing or insulting them about religion or faith can be cruel or mean. Many of us who have been psychotic have a unique view of religion because many of us have spent time believing we were the Messiah, talking to God, talking to angels, talking to demons or had a unique perspective into the fate or creation or many other things about the world. After our psychosis is cleared up by medication, it can take awhile to “close” that open door in the mind. The past two times I was recovering from psychosis, I watched Christian television for sometimes 8-10 hours a day. The stronger my mind got, the more I saw it as Christian entertainment and less as “the truth.” For instance, I don’t believe people are “overcome” by the Holy Spirit and fall shaking on the ground at the “touch of a man.”  I don’t believe it, but when I am healing my mind, it is a good thing for me to watch, a safe thing for me to watch. If you do believe that please forgive my skepticism.

When an atheist argues with someone who has schizophrenia about religion they don’t know where that person is in their healing, or if they still hear angels, demons, God – medication doesn’t always clear up voices and delusions for everyone. To tell that person that God doesn’t exist and then try to argue with them about it and “prove” why is an exercise in arrogance (which I will say I see a lot of in atheists. The atheists I know think they are smarter than everyone else. Instead of respecting differences, they call religion, “believing in fairy tales” and other condescending things. I have never, not once, met an atheist that wasn’t condescending in their arguments with me. And each of them said they weren’t condescending even after telling me my beliefs were a “crutch” “magical thinking,” etc.).

No one but the person with schizophrenia knows what it is like to go for weeks, months or even years with religious hallucinations, delusions, and voices. It is possible when a person starts to heal; they will reject religion altogether, but with most people that isn’t my experience. Those of us who have had, in many cases, intense and profound religious experiences tend to remain religious even if we know that our former experiences were not part of a “healthy” mind.

I think if you want to argue or debate religion it is best to do it with people who haven’t experienced a psychotic break that involved religiosity. No one can say how we have been altered and changed by that experience and which parts of it were Biblically accurate or completely formed from the disease. It is best to allow people with schizophrenia to work out their complex feelings about religion with someone who is compassionate and extremely educated about theology, not someone looking to argue, debate and “prove” how intellectually superior they are.

 

 

 

A Not So Gentle Reminder

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Last night my husband and I had to run some errands. One errand was picking up my medications, but there were several others as well – things that just couldn’t wait. I haven’t been on a regular sleep schedule (as you can see I am up at 2 AM). So, I ended up taking my medications at 4:30 AM yesterday morning which meant I needed to take them again at 4:30 PM. Like many people, I need to take my pills with food for them to be the most potent. It was past 5:00 PM when we got to the grocery store to do our shopping. I was irritated, hungry and I wanted to get home to eat and take my medication. I don’t like getting off a schedule with my meds.

When we go to the grocery store, I am very fast. I go quickly to the things I need and then I am ready to go. My husband likes to go down every aisle and look at everything. Although we are partnered well with most things in life, our grocery store shopping habits don’t match well together. Normally, this doesn’t bother either one of us too much, but I was cranky.

After finding everything on the list, I went to find my husband. He was in the spice aisle talking to a woman. The woman was asking him about spices. I thought she was drunk. My husband (being one of the nicest people you will ever meet) was helping this woman find chicken seasoning. Then she asked him to help her find sea salt. I was standing behind the two of them with my hand on my forehead fuming. I was so irritated with my husband. Did he have to help everyone even when he knows I need to get home and eat and take my medications?

My husband looked over and saw my irritated and angry face and said goodbye to the woman in the spice aisle. I said, “I need to get home and take my meds!” My husband said, “Okay. Okay. I didn’t realize it was an emergency. Let’s go.”

When we got home, and we were putting away the groceries my husband said, “The woman in the spice aisle was legally blind, she couldn’t read the labels.” That is when my heart sank, and I felt a burn of shame. I was so worried about myself and my needs; I couldn’t even relax and allow my husband to help someone who was visually impaired find and get the things she needed. It reminded me that I am often too quick to make judgments about people just like they are too quick to make them about me. I always want people to slow down, listen and learn with me, but I need to do the same for others.

To make matters worse, my husband, being rushed by me at the grocery store didn’t get to buy some of his favorite foods for this week. My impatience and concern for myself kept the person I love the most from having the things he enjoys.

It reminds me of the lyrics of a Kinks song that I loved in college, “Stop. Hold on. Stay in control.”

I guess I needed a few lessons yesterday, and I learned them the hard way.

Low Energy Tips and Tricks for Looking Your Best on a Mental Health Day

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There are days when all of us feel like washing our hair, brushing our teeth and putting on makeup is too much for our tired, anxious, or depressed body to do. There are days when getting out of bed seems almost impossible.  Since 1 in 4 Americans will have a mental illness in their lifetime, it is no joke to talk about mental health days. Of course, even people without an anxiety disorder, depression or some other form of mental illness, need a mental health day. In our work-centered society, taking a day off from the office, or passing on an important social engagement isn’t always possible even if we feel we need to do it to care for our selves. So, how do we get up, make ourselves presentable to go to work, or that party our boss invited us to, or that bridal shower for our bestie when we can’t imagine going through the process of “getting ready?”

The answer is in basics and statement pieces. These two things can become your go-to when you have to cut your daily hygiene or beauty routine short. Consider these tricks and tools to be your mental health beauty bag on those days when energy is at a low and apathy is at a high.

If you have trouble washing your hair on difficult days, you might find buying one of the many dry shampoos that are currently on the market to be a lifesaver. If you have long hair, you might be able to wear it in a simple braid or a ponytail or bun and pull off a fresh look. I recently cut my long hair into a no style (multiple different layer lengths) cut so even when I roll out of bed, my hair looks good (it feels like a whole new world).

On a good day, some people enjoy powder, foundation, blush, eyeliner, lipstick, and mascara. On a bad or low day, this can seem impossible to pull off. For my mental health days, I limit my make-up to two things, and I make them stand out. I have purple eyeliner and purple mascara in my mental health bag. (I tried blue lipstick, and with my fair complexion I looked horrible). Finding, your two stand-out pieces, might take some trial and error. But a great shade of lipstick (maybe not as drastic as blue) and a colored mascara can often be all you need for a pulled together look.

I know for many of us we could live in our yoga or sweatpants, but that doesn’t work as business attire in most offices. For statement pieces in my wardrobe on difficult days, I turn to one item of clothing that I love. It might be a blouse, a scarf, a pair of shoes, a skirt, or slacks. Just one item that I think is fashionable and that makes me feel good. I put on that item with whatever else makes me comfortable (comfort and low-effort are key). Remember this is your trick and toolkit for surviving and (putting on the face of thriving) on your hardest days.

That leads us to accessories. On a good day, I put on earrings, a necklace, several rings, a tennis bracelet or I grab a handful of bangles and mix and match them stylishly on my wrist. On a low or no energy day, I do the same with accessories as I do with my outfit. I pick one thing that I love, and that is unique (as in a one-of-a-kind piece from Etsy, or a farmer’s market). With my new short hairstyle, I usually pick big dangly earrings, but in the past, I frequently grabbed a necklace.

Then we get to brushing and flossing our teeth. I could offer you a mint, but other than that, on this one, you are on your own.

Update, Code Blue, and Empathy in People with Schizophrenia

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Quick Note: About yesterday’s post and not getting the job. One of my closest friends said it could have easily have been ageism and not my diagnosis. She said she and her husband have both been passed over for jobs for being over 50. Either way, this is not good, but one (my age) I share with millions and millions of people while schizophrenia is less common and far more stigmatized. Anyway, I just wanted to make that update.

Today, was my day to get my blood work done. In a few days, I will find out if my cholesterol or sugar is too high and if the medication is damaging my liver. Those of you familiar with antipsychotics know all of the side effects. For the past six years or so, my sugar and cholesterol have been borderline – we will see how it goes this time. Anyway, I hate giving blood, because I hate doing anything that has to do with doctors. But none of this is what I wanted to write about today.

While we were in the hospital, there was a code blue. The loudspeakers (very loud) started blaring, “Adult. Code. Blue.” I immediately started to cry because I imagined somewhere in the hospital people were praying that their loved one would be resuscitated. I imagined the fear, pain, and suffering of people who may be one floor above me or even a few feet away.

I often read that people with schizophrenia have stifled emotions. When I am not psychotic, I do not have stifled emotions. I am empathetic to a fault. There are very few people whose pain I can not imagine or imagine their feelings. When someone I know suffers, I suffer along with them.

My whole life I have experienced hypersensitivity. When I was married to my first husband, I would occasionally cry myself to sleep at night, and he would ask, “Are you crying for the whole world again?”

I think it is probably common for many people with a mental illness to be sensitive to a fault. In my case, when I was younger I internalized everything and took most things personally, as I age, I do that less and less but rarely does a day go by that I don’t cry. I cry over the news. I cry over Facebook posts. I cry about disasters and wars happening in the world. I cry that people don’t have the healthcare that they need. I am a crier and a frequent crier at that.

There are times when I feel guilty for being sick and being the focus of all the attention in my house – like sucking all the air out of the room. But it doesn’t last for long because when I get my footing, I am a very caring person and won’t take advantage of anyone or let anyone feel like me being the center of attention is going to last forever or won’t be appreciated or reciprocated.

I just checked with my husband about this to make sure I am writing accurate information, and he agreed – I don’t take advantage of him and I am always very appreciative. I think these qualities make a huge difference in the caregiving experience and help our caregivers not burn out or feel under appreciated. I know people with schizophrenia are not always capable of saying thank you or showing their extreme gratitude, but my guess is when they get their footing, they will feel it. I don’t believe our emotions are stifled at all. I think we feel and feel deeply. Psychosis changes us, but if we are lucky, our medications will give us insight and insight can lead to a soft heart that is easily impacted by the world.

 

Would You Hire Someone with Schizophrenia? Be Honest.

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I’m slightly heartbroken. I haven’t written about this until now because I was trying to lay low about it, but I applied for a job and found out yesterday I didn’t get it. Initially, I applied for the job online. The company had me take a test. I found the test to be one of the more difficult I have taken for employment. I must have done well on the test because the company scheduled an interview. I interviewed and thought I did well. The company then set me up for a computer conference interview with two other employees. I thought that interview also went well. Part of the interview was another test. I didn’t do great on the test, but I didn’t bomb it either. In the years since I graduated from college, if I made it to the interview I almost always got the job.

I can’t help it, but I keep thinking there is a possibility that the company Googled my name and came up with dozens of articles about schizophrenia. This is the second time since I decided to disclose my diagnosis publicly that I have been turned down for jobs I was highly qualified for and after I went through lengthy highering practices.

I have tried working a few times in the last few years, and it hasn’t worked out, but this was a job I knew I could do. It was a work from home customer service job. I have years of experience working with the public in difficult situations.

It is possible that they found candidates that they thought fit the position better than I did, but the possibility that they discovered my diagnosis of schizophrenia and chose not to take a chance on me because of stereotypes and misconceptions, will never entirely leave my mind.

I wish I could find a part-time writing job because artists and editors tend to be less judgemental about mental illness than the general public. Also, I could work from home, be creative, and not worry about the symptoms that crop up on a daily basis.

I’m happy that the writing world works differently than the rest of the world – you pitch to an editor if they like your story they either tell you to write it on spec, or they buy it outright. I’m having a tough time selling enough articles to make a substantial paycheck, but I’m going to work harder at it now.  I feel like I am personally fighting stigma, disability, misconceptions, etc. and that has put a determination in me to succeed and say, “See, I told you, I am worthy. See, I told you I am worth it.”

I want to be one of the ones who can make a livable paycheck and have their dreams come true at the same time. Stay tuned – let’s make this happen.

Look for much more writing to come.

Think Twice Before You Lie to Someone with Schizophrenia

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I just ate a piece of bread with hummus on it from a woman giving out samples in Costco. For some reason, the bread or the hummus tastes differently to me. Fear overcomes me. I begin to think the food may contain poison. I start looking for my husband who I left in the computer aisle. When I find my husband, I ask him to go to the woman and taste the food. He recognizes the fear and urgency in my voice so although he is not hungry and doesn’t like to sample foods, he goes to where she is standing and waits in line for a sample. He tastes it. “It is fine,” he tells me. “It tastes good.” This moment is critical, I will either be comforted by my husband’s words, or I will move into a full-blown panic. This time, it works, and I immediately begin to calm down.

The scenario I just typed is one example and one incident among hundreds that happen in one variation or another in our lives. I fear something. My husband tries to show me or tell me why the fear is irrational. He never tries to help me condescendingly. He does it factually, and straightforwardly.

This example of trust is why I titled this blog post, “Think Twice Before You Lie to Someone with Schizophrenia.” I know that it might seem easier sometimes to lie to someone who is paranoid or psychotic, but in the long run, and in my experience, it will damage how much you can help that person in the future.

I have built twenty years of trust with my husband. He is one of the few, if not the only, people who I believe all of the time. That isn’t to say that his honesty with me comforts me one hundred percent of the time, but it does about seventy-five percent of the time, and that is a lot. If we can prevent seventy-five out of one hundred panic attacks or episodes of extreme paranoia, I think that is pretty good. (The number may be higher, I don’t know. I just know it works more than it doesn’t).

I know that telling a lie to someone to get them to go into treatment if they are actively psychotic may be necessary, (and if it helps someone to get the help they need, I am all for it). But I would weigh those situations before deciding to be untruthful. The consequences of lying can last far into a person’s recovery and treatment.  Without someone who I trust, who knows how many times I would have struggled severely with hallucinations, delusions, paranoia and other symptoms. Having someone to trust can be as good as a potent medication at times when symptoms don’t have a strong grip on someone with schizophrenia.

Misfits, Sugar Cookies, and Mental Illness

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Wow, I can’t believe it is almost Thanksgiving. I made reservations today for my parents and my husband and me to go to a buffet that we have been to on many Thanksgivings in the past. I love this buffet. It is expensive (but much less expensive than any of the other buffets in town), and it has cookies. Yes, believe it or not, with all the turkey, cheese, potatoes, ham, seafood, eggs, bacon, and desserts, I get the most excited about the cookies. I am a nut for sugar cookies. I love them, and there was only one year when they didn’t have a couple of different kinds of sugar cookies.

I know the holidays can be tough for many people. Some people are alone. Some people get depressed. Some people are reminded of traumatic experiences of holidays past. If you are one of those people, I am sorry. I wish you lived in my city because I would invite you to go to the buffet with us and maybe my enthusiasm for sugar cookies would wear off on you. Maybe, you would find it quirky enough or silly enough to make you smile. Maybe, they would be serving something that is one of your favorite comfort foods. Maybe, the casual kindness and acceptance of the four of us would help you get through a hard day.

I just read the “Misfit’s Manifesto” by Lidia Yucknavitch, and I would welcome a Thanksgiving dinner of a group of misfits. If you have a few bucks (I know it is tough especially with Christmas coming up) I recommend buying this book if you have a mental illness. If you can’t buy the book, then you can download her TED talk that is a companion to the book. I think you will find a certain comfort in the fact that many “successful” people have taken some broken paths and winding detours to get where they are, and that those people often feel on the outside. As someone with schizophrenia, I always feel on the outside.

I can’t go anywhere where I completely shed the fact that I have schizophrenia. I am almost always (except for a few things I find very distracting) reminded of my illness and how it sets me apart from those I am around. It is always isolating to be aware that I am different. That my experiences, my brain, my diagnosis is something that most people can’t identify with. Sure, maybe they can identify with suffering (we all suffer). And maybe they can identify with having to take multiple medications every day, or go to get blood work all the time, or small things like that, but the experience of having your mind turn against you is not something the average person can relate to their experience.

Hopefully, there is a way or a time that many of us “misfits” can get together and share a holiday or just share a lunch, brunch or cup of coffee. But if we can’t be together in person to ease the discomfort of being the outsiders, maybe we can agree to meet here, and I will try to tell you how good those sugar cookies are so you can get a sense of how the smallest things can bring me great pleasure.

As the holidays near, I hope you can find those small things that please you too, even if it is as simple as a cookie. Also, know that us “misfits” are out there getting through the holidays, too – some probably better than others but each of us feeling different than those who surround us.

Happy Holidays fellow “misfits” I am thinking of you.